Today I had appointment with my MO's nurse practitioner. It was agreed that I could end my ADT vacation and restart ADT for six months to start with. My PSA son ADT vacation went up from 0.135 on may 28 to 0.453 on August 28, while my T rose from 114 to 147 during the same period. Due to nationwide Lupron shortage, I got a 3 month Eligard shot.
History
November 2018 started Lupron + Casodex for lymph node metastasis with a PSA of 4.48. Break from ADT November 2019. PSA rose from 0.06 in November 2019 to 0.07 Feb 28, 2020, 0.135 May 28, 2020, and 0.453 August 28, 2020.
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dac500
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Then why take a break at all? Why risk letting the cancer grow? It's only a vacation if you feel better. Apparently, T of 147 didn't make a dent. I agree that Casodex adds little. Eligard is exactly the same chemical as Lupron (leuprolide acetate depot injection).
I don't have a major CV issue. For the last 11 years I have mild aortic regurgitation that has remained very stable. I personally think I took the right decision restarting ADT.
My urologist/oncologist that I haven't seen for three years recommended that I take a break from my tE2 regimen after two years even though I have no side effects other than the boobs. Richard Wassersug's opinion is the same as yours..."Why let the cancer grow?"
He is of the opinion that I may become resistant to this treatment over a period of a few years, and he probably still doesn't believe that I have no side effects other than the boobs. Perhaps also concerned about CV events because of my ripe old age of 77; however, I have no preexisting conditions. Maybe he is also not convinced that tE2 is far safer than DES was.
I am surprised that a PSA value of 0.453 triggered the end of your break. Usually you can wait for a higher value. In this study they waited until the PSA value got above 10.0 ng/ml
Not only in this study...many studies including SWOG trial by Maha Hussain used re-starting point as PSA of 10 or emergence of symptoms.
I have completed 9 months of Off Period and now have PSA 1.2 and Total T of 260. I notice a very clear improvement in side effects..hot flashes almost gone...energy level greatly up..mood much better...sexual desire is returning... I can't believe testosterone can change things so much. Yesterday, MRI came clear and ALP is 51. I plan to continue as long as I can on this off period because I like it this way. My Prostate is untouched so up to PSA 4.0 can be considered normal.
How well you recover your quality of life when on break may depend on your age. In my case, I didn't any significant change after stopping ADT. My prostate has been cooked with brachytherapy and is expected to produce very little PSA. When I started treatment for metastatic cancer my PSA was 4.48 most of which came from outside the Prostate. Rapidly rising PSA in my case simply means metastatic cancer cells multiplying rather fast.
That is true. We can only decide accurately after knowing all the facts about each individual case. There is no one size which fits all. My Initial PSA was 830 meaning my cells were churning out PSA non stop. But those cells also got killed very quickly resulting in 0.2 PSA in 11 months. Seems you are right as your situation is very different. I am just keeping fingers crossed and watching closely as to when to end Off period.
The article you have referred is for persons on ADT after radiotherapy for localized prostate cancer. In my case it is metastatic prostate cancer. I had brachytherapy in 2011, an extra capsular recurrence treated with cyberknife + ADT in 2016-17, and extensive lymph node metastasis in 2018.
My primary concern was how rapidly my PSA was doubling (PSADT of about 1.7 months), not the absolute value of 0.453.
Thanks. I have read the article. I have experienced very little change in quality of life since I started a break from ADT nine months ago. Restarting ADT now has been a good decision.
Welcome to the club of blokes having to return to ADT after finding out that the initial time for ADT may have been say 2 years or 6 months, maybe with EBRT in that time, then finding Psa just zooms up when ADT is stopped. I had ADT for 2 years after April 2010, Psa went from 8 to nadir of 0.08, but within 6 months of ADT "holiday" Psa went back to 8.0, after testosterone returned to normal. So I have been on ADT ever since 2013, and it all failed even with added Cosadex then Zytiga in 2018, and I had chemo which failed, so I had Lu177, which worked better for 18 months, but now getting more Lu177. I may get PARP inhibitor if my results of DNA testing show that could be good for me.
Highest Psa since diagnosis in late 2009 was 50 after 5 shots of Docetaxel in late 2018.
But I still manage to cycle 200km a week and live without Pca symptoms, but worst side effects were from chemo giving me lazy feet. But today I cycled 80km at good speed for a 73yo man with quite a lot of bone mets still to be killed by Lu177.
I may find that I run out of options if I need too many shots of Lu177, and that PARP don't work, and then unless something else comes along Nature will command me to begin to un-live. I will be kaput, stuffed, wrecked, or reduced to smoke or fertilizer. I'll not succeed at crossing that bridge when I get to it. This is why death is so darn annoying, we have to give up all the things we like doing.
Yes, my doc at Theranostics Australia mentioned use of Ac225 with Lu177 as a future possibility last year, with an unspecified % of Ac 225.
I'm talking later at 5:30pm to my doc about how he sees my progress which depends on my latest Psa result I had taken a few days ago. I don't know what that is yet.
After I had first Lu177 shot in Nov 2018, Psa remained steady at 25, but came down a bit to 17 after second 2 shot, then began bigger reduction with 3rd and 4th. So it was worth getting because it seems to have eliminated all soft tissue mets, leaving only bone mets. Ac225 would indeed be good for the bone mets but I'd have worse side effects of a dry mouth which so far have been minimal.
Basically is seems maybe a cheaper lot of followup radiation by nuclides could be done but with cost of increased side effects. So I'll try to avoid the lasting side side effects and pay a little more.
One side effect of all radiation I have had is very handy for me. If I drop my TV watching glasses on the floor and can't see them, I just lower me pants and me prostate area shines out a bluish grey nuclear light and I soon find me glasses in the dark. Because I live alone, without a wife, there is nobody there with me who would be disgusted by such practical solution at finding things in the dark.
Its all quite different to being 30, when a lady was glad I was there in the dark, and knew I could be relied upon to find a certain furry thing very easily.
I think Donald Trump could be told he has Pca and needs radiation. Fake radiation will do, and might be real good. But even with a PG that didn't emit light in the dark, he'd still need to get his wife to find his glasses.
Maybe also he needs to lamp bulbs fitted at each side of head to turn on when he is telling fibs in stereo mode. Just so everyone knows.
Biden of course seems a little bit prone to losing copies of speeches minutes before going on stage to make a pile of promisings, but with Kamala by his side, who cares, seems like she's got oomph equal to a team of 6 good young men.
But whatever are these ppl gonna do to make Lu177 approved? It seems to me some latest treatments are being held back so medical providers of other Pca treatment that doesn't work all that well can continue to make millions while patients have to be kept poor. FDA approvals are subject to what doctors really want. But here, if chemo does not work, then a man can get whatever he wants. But it ain't disinfectant like Dear Don said might work with C19. Not that Chlorocline stuff either.
But some marrow transplant with cells from Germaine Greer might work real well against Pca, a manly disease not tolerated by feminist immune system. But side effects of such a bone marrow treatment turns an easy going happy man into a very grumpy old lady.
Time I STFU I think.
Time I went to my shed and did more craft work for the day before its all gone.
Yes like not telling anyone that there is a treatment called AC-225 and LU-177 and offer a 10 year old radiation machine. Same thing. Whats that all about?
Lu177 and Ac225 was only able to be used when Novartis invented chemical ligand to take these potentially lethal nuclides to cancer sites and nowhere else. It was all pioneered in Germany in Europe, not USA. The medical system in USA is the most costly system in the world to patients and our Australian Medicare one of the cheapest, and USA could never have what we have in Australia because US doctors earnings are so high they cannot be funded by US government. It also seems that many ppl in US hate paying one cent toward any medical care cost that is spent on other ppl, until of course they get sick, and then they must fund their own care.
So medical insurance is high cost and with many exclusions. Just why does Provenge cost usd $150,000? It gives mean extension of life of 4 months only.
US doctors and whole medical product making system has huge political power to manipulate Govt to suit wealthy patients, and not the poor. New treatments are often resented because it has effects on those using old methods which cost them millions to buy. The best medical gear is horrendously expensive. Its taken many years to get it to work right, then some new thing comes along and makes it obsolete. Who pays for that economic loss? Patients. So you can see why the conspiracy idea that innovative treatments are hushed up and delayed, because it upsets the status quo.
But Lu177 ain't cheap. It involves making nuclides in an atomic reactor, and highly skilled ppl operating at the top of the skill pyramid. And our Australian medicare still won't fund Lu177 because Lu177 still doesn't have approval. It works a lot better than chemo for many men. Its being offered to some patients at Peter Mac in Melbourne as primary treatment to men newly diagnosed with Pca and now competes with docs performing RP. Its called a "Lutectomy" Peter Mac is a public and thus govt funded hospital just for cancer, a huge place, and once you are admitted, its all free.
So you can get cancer, and be treated well in Australia, and no doctors steal your house before you die.
Lutectomy.Cracked me up. How true. PSMA scan at Heidelberg 900 Euros. Michigan University wanted $5000 US but turned me down for a silly reason . Turned down because I still have a prostate.HUH ? True
Here in Australia, in Melbourne's Peter Mac Hospital, a giant place specializing in cancer treats, the PsMa Ga68 scan is recommended when Psa goes above 5 and PG needs to be examined. Its the most reliable scan to start off with, and not the CT scan.
It cost me about usd $500 for each scan and I have had about 7 since 2016, and I've been told there is less radiation accumulating in body than if I had CT scans.
Whether you have a PG or not does not affect elligibility for PsMa scan here.
Sometimes I have spent 30 minutes with a doctor, there is not talking down, they go right through all blood test items, so I really like the fact there ain't some accountant goon glaring at the doctor with a stopwatch to time the visits.
BTW, My Psa is now 7, down from 30 just before No 5 Lu177 last 24 July 24. Lu177 is working better than it did in first round of 4 shots Lu177 from Nov 2018 to May 2019. Doc will give me more Lu177, then we sit back a bit, and have another PsMa scan.
I recently came off a 4-year vacation from Lupron+Casodex and my PSA rose from <0.1 to 34.8 during the vacation. That is a much slower rise than yours. (We were waiting for a sign of the metastisis on scans), which happened in a manner questionable to me, but the high PSA worried me more than the radiolgist's report) in June this year. I suspect that your cancer is much faster growing, or possibly you have quite different diet, or something quite different from my case. My PSA in June was 34.8. latest early August PSA 0.8. Previously I had three sessions of Lupron+Casodex, about two years apart, in 2012, 2014, 2016. In each of those cases it took about 18 months for PSA to rise to 10. Rise from 4 to 10 was usually over a two month period. Resumed in July with Lupron + Xtandi.
I would suggest that you recheck the PSA. Make sure the location of the tumor, (assuming you know where it is), is not stimulated for several days prior to test. Also, you are testing to three decimal places. 0.453 is still very low in my opinion, to warrant resumtion of Lupron. You should wait until higher readings. PSA fluctuates, and is not always a reliable predictor of cancer growth. In my case I had radiation therapy in 2008 and it took three years before metasasis caused PSA to rise above 4. Meanwhile my PSA varied from <0.1 to 0.6, seemingly a sign of leftover prostate cells in the prostate.
Regarding testosterone, In my case, it never got below 200 with Casodex. However, with the latest test with Xtandi it came down to <3. Xtandi seems quite more effective.
Also, to add to the confusion, I treat lymph tumors with my own version of heat therapy and I have a high lycopene diet, Lately I have tried magnets. It took almost a year for my PSA to rise from 0.1 to 0.5, back in 2017, after Lupron + Casodex series was completed in June, 2016. In your case it was a bit shorter, Nov. to Aug., 9 months.
Boils down to benefit v risk. Only you and your medical oncologist and cardiologist can decide your best course of action. Everybody is different with varying degrees of co-morbidity. Stop Lupron/Eligard and in most cases your cancer will grow with or without testosterone.
If your medical oncologist thinks that your cancer is cured, then stop the Lupron/Eligard injections. If your cancer grows, then re-restart...... Just as there is controversy among patients, there is controversy among cancer researchers.
I was previouly treated with brachytherapy in 2011 for Gleason 3 + 3
With cyberknife and ADT for extra-capsular recurrence in 2017-17
My latest treatment is for multiple abdominal and pelvic lymph node metastasis with PSADT < 2 months in November 2018. I was on Lupron + Casodex for one year when my PSA went down from 4.48 to 0.06. Then I started a break. For the first three months of the break PSA rose from 0.06 to 0.07 and T < 20. From Feb 28 to May 28 PSA rose to 0.135 and T to 114. Between May 28 and August PSA rose to 0.453 (PSADT < 2 months) and T to 147. it is due to the increase in PSA between May and August, I decided to start Eligard (Lupron in short supply) for at least six months.
I would get a psa towards the end of month three and see what the numbers show. If it goes back down to the lowest previous level noted for Aug, then I would stop ADT and go on a break again, until your level goes back to the May level. In fact, I do not restart Lupron until my psa has reached 3.5 so you might consider waiting even longer, as the more time off, the less side effects and damage and the better your body will be in the fight on the next round. It has worked for me for some 26 rounds now, so worth a shot.
I guess I agree that this a vacation doesn't give you any relief from the perceptible SEs, it's of dubious value, though there are things like bone density loss and CVS damage to be considered as well.
Relief from of the perceptible SEs is why other ADT regimens like Relugolix (faster T recovery), bipolar ADT (instant T recovery), and tE2 (no estrogen deprivation) make good sense, at least to me.
I suppose it's also a function of how s****y you feel, too. There are some people who have no degradation in QoL, while others blow their brains out because they can't stand it. Most people (obviously) are somewhere in the middle, but it's a huge range.
Also, being proactive and responsible about the disease tends to bolster one's attitude.
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